ALS: A Story

Tonight, the Schaumburg Boomers will host a fundraiser for the Les Turner ALS Foundation as the Boomers open the exhibition schedule with the first of 10 games by welcoming the All-Stars from the ALS Chicago North Men's Senior Baseball League...All proceeds go directly to the Les Turner ALS Foundation and at $10 is well worth the donation, especially to get a first peek at your Boomers (It is only the second day of spring training after all...

May is ALS Awareness Month, and ALS is a cause that hits close to home for me...I've been thinking a lot today about my friend and colleague Nick Huber, who lost his battle with the disease in 2008...I will post a story at the end of this post about Nick's fight specifically but first a few thoughts...

After college I moved out to Iowa to accept a position at Loras College in Dubuque...Nick was in my position at Buena Vista University way out on the other side of the state in Storm Lake, Iowa...I don't remember the exact details of when everything transpired in his fight in terms of diagnosis and whatnot, but Nick was aware in 2005, and I'm pretty sure he was diagnosed as early as 2003, at the time he was the youngest ever to be diagnosed...It didn't affect the way he performed...In fact, I think it helped all of us in the Iowa Conference to elevate our game so to speak to try and match his passion for college athletics at the small college level...

A few things that I can remember vividly about his fight...First, Nick went to China for an experimental stem cell procedure to try and at least slow down the symptoms...This was typical Nick, he sent us all an email worried about how stats were going to be covered while he was out of the country...I was the GA at Loras at the time and my boss I think spoke for all of us when he replied...Nick, don't worry about the stats, worry about getting better, we are all pulling for you and thinking of you...

After 2005 I took over full-time as the SID at Loras and I remember traveling to Storm Lake with our football team that September (It was like a five hour trip so that was always a leave on Friday for the Saturday game) and having dinner with Nick and his wife when he was still able to walk...Just talking the night away about our jobs, sports, family, friends, experiences...I specifically remember discussing hockey...He went to grad school at a Division III school in Minnesota that had hockey and I was curious to hear stories...Loras lost that game 14-0...But I don't remember anything about the game...I remember the time with Nick...

Basketball season always brought at least one visit from me to Storm Lake, sometimes more than one as I recall a few trips there for the conference tournament...I always went out of my way to try and make Nick smile at least once a trip, seeking him out before anything else when arrive at BVU's campus, as I watched the disease progress...BVU rallied around Nick, as did the Iowa Conference...

In my final year at Loras we hired Buena Vista's football coach, a Dubuque native, to take over our program and I remember spending time talking to him about how he knew Nick and hearing first hand more of the stories of his daily battle, and about how people went out of their way for him...

During the spring of 2007 I moved away from Iowa to focus on my passion, broadcasting baseball...The words are still etched in my brain of an email response from Nick, who during the battle, while losing the use of motor skills was able to use a voice recorder to speak words that would be automatically typed into emails for him...Nick used writing as his out, forming a blog with his wife to construct thoughts about everything from sports to politics and his battle...The blog was transformed into a book upon his passing which sold out quickly...The title of the book says it all...Running With Nick: Laughter, Wisdom, and Inspiration From the Man Who Taught Us All What it Means to Live...

The email said the following...I'm happy that you get a chance to pursue your dreams...I always felt there was a double meaning to this in some way...And I know I am reading into it...But Nick, like me, was an active broadcast and media young professional...Obviously there was the given that he was happy...But underneath it I read the you get a chance to pursue your dreams...ALS denied Nick the chance to pursue his...

I remember sending an email to a colleague in the Iowa Conference in the summer of 2008 to check in...It was then that I first heard the news...Did you hear...Nick lost his fight...I remember not feeling the same the whole day, going back and reading the words of his wife Ann on his peaceful passing...I still scratch my head and wonder why...Why at 28 did such a promising young man have to be taken by a disease for which there is no known cause or cure...But then I think of Nick...And I think of what he would have wanted...Never focusing on the struggle, always on the little small things of the task at hand...The summer of 2008 I made my first ever charitable donation...To the ALS Foundation, in Nick's name...Today I wear red for the ALS Foundation, and I hope that maybe the story of Nick, or Les Turner, or someone, encourages you to spend a little time today reflecting...As I just mentioned, I am not usually an advocate for anything, at least publicly, but tonight, at Boomers Stadium, you have the chance to make an impact in the fight against this terrible disease that took Nick, Les Turner, Lou Gehrig, and so many others before they should have...

Honestly writing all this has again made me a little emotional thinking of not just what he went through, he wouldn't want that, but the courage and determination he showed down to the end...He fought for knowledge and awareness as well as attempts to lobby for legislation...Nick was a fighter...And he went down swinging...I hope he knows what kind of impact he had in his short time in this world...

Did you know...ALS, commonly known as Lou Gehrig's Disease, affects 35,000 people annually with somewhere in the area of 5,600 new cases being documented every year...No two cases are the same which makes it even harder to support...It's a quick battle...Les Turner, whom the foundation tonight's proceeds directly go to support was named after, one of the largest ALS organizations in the nation, lasted just over a year from his diagnosis...I know Nick's fight was at least four years...

I found this article about Nick last night while I was searching to see if I could find any of his blog posts...I remember reading it when it came out in 2007, just over a year before he passed...It inspired me then and I hope it inspires you some today...

From the Des Moines Register:
Buena Vista’s Huber fights for life, cherishes wife and work:
Nick Huber cherishes his wife and job, but at 27 is fighting for each new day

Nick and Ann Huber were mingling with friends at a Super Bowl party when somebody asked: What's the first thing you would do if $1 million suddenly landed in your lap?

"Quit my job," one friend said.

"Me, too," said another.

"Oh, in a heartbeat," another replied.

The question floated around the room until it got to Nick.

"I would buy just about anything I could," he said, "to keep me working."


The last thing Ann Huber does before going to work each morning is drop her husband off into the waiting arms of his mistress. Nick usually turns up at Buena Vista University's sports information department a little after 6 a.m., when Siebens Fieldhouse is nothing but a cold, dark whisper. One of his favorite new morning rituals involves piloting his motorized wheelchair out to the nearest window and watching the sun come up.

"It's like my mentor said, 'Whenever you're doing your job right, it's boring,' " Nick says, slowly, in a soft, strained voice that breaks your heart. "You've got to be creative. That's why I love basketball season. We're actually good."

He grins. The eyes glisten. Nick is the 27-year-old sports information director at BVU, an army of one, the mouthpiece for the Beavers' 17 teams. He was diagnosed with ALS, amyotrophic lateral sclerosis, Lou Gehrig's disease, on Oct. 15, 2003. A week before his 24th birthday.

"National Grouch Day," Ann chuckles. Irony. "It's always written on my calendar."

He's a skinny bundle of energy, but his fingers fight him. His arms fight him. So do his lungs. ALS is a merciless, neurodegenerative disease that attacks motor neurons in the brain and the spinal cord. Basically, it shuts your body down, one circuit at a time. There is no known cure.

Many patients die within five years of their initial diagnosis. The average age of its victims is 55. Nick Huber is a young man. He sleeps with a mask that assists his breathing. He has spent much of the past four months in a wheelchair. Before that, he was using a scooter.

He doesn't type anymore. He dictates through a special headset connected to his laptop. A computer program then converts his words to on-screen text. A team of student interns helps speed up the production of media guides and press releases.

"They're my fingers," Nick says.

Ann, a registered nurse, is his rock. She dresses him, feeds him, shuttles him to and from work.

"It's gradual," Nick says of ALS. "But in a way, it's fast."

So fast. Too fast.

Before the Beavers' men's basketball team was to tip off against Augustana (Ill.) in the Division III playoffs last March, coach Brian Van Haaften asked Nick to address the players in the locker room.

Live for the moment, Nick told them. Embrace it. Cherish it. Life throws you curveballs. Look at me.

"No matter what, you're not going to be with the same guys again, the same coaches," he said. "Appreciate what you have when you get an opportunity."

Van Haaften makes it a point to try to visit the sports information office at least once a day. Before road trips, his players will stop in to see Nick and say "hi" on their way to the bus.

Since Nick was hired in the fall of 2004, he and Van Haaften have become good friends. Maybe it's because both hold their work to high standards. Maybe it's because both are among the best in the Iowa Conference at what they do. Maybe it's that they're both Chicago Cubs fans.

"He's a lesson in his own right," Van Haaften says. "I mean, you look at him right now. He's in a wheelchair. He could crawl in a hole and say, 'You know what? I'm done.' And he would be. He doesn't have to be this way. But you know what? He is. He's an awesome guy."

Officials at BVU knew Nick had been diagnosed with ALS when they hired him. They didn't care. He'd floored them during the interview process. He vowed to make the Beavers' Web site the best in the league. He promised to get BVU box scores up on the Internet faster than any rival school.

Then he went out and delivered.

"I think everybody's wishing they could do something," baseball coach Steve Eddie says. "But maybe we just need to learn from him."

She was soaked. Soaked, hungry and tired. Ann had made up her mind: It was the worst day of her life.

This was a few years ago, when Nick, not exactly the outdoors type, had decided to take them camping along the boundary waters. Naturally, the canoe tipped over during the trip. Naturally, there were snakes all over the place.

Ann was getting ready to start making dinner when Nick pulled her down to the banks. He wanted to show her something.

"I took your advice: I got a pet rock," he said mysteriously. She'd been teasing him lately that he needed to get a pet rock. "But I don't think I could take care of this one by myself."

With that, he pulled out a diamond ring and asked her to be his wife.

Nick and Ann had met as freshmen at Luther. They were engaged when the neurologist told Nick that the odd twitching under his skin - like worms - was the early stages of ALS.

When he told Ann, he expected that she might want to call the whole thing off. Heck no, she said. We're doing this. So they moved the wedding up to November 2003 - a month after the diagnosis - to give themselves more time together as a couple.

"They tell it like it is to each other," Eddie says. "If one of them's not happy with the other one, they're not scared to say it. They're so compatible."

Hand in glove. A team. When Nick went to Beijing, China, in December 2004 for an experimental treatment, Ann came along. "A leap of faith," she called it.

They drilled two holes at the top of his head and injected stem cells. The next day, Nick's walking improved. But the sensation was gone within a few weeks. The deterioration continued its slow, relentless march.

The Hubers are planning ahead, so Nick can stay at BVU for as long as physically possible. He's seeing a speech therapist. They're shopping for an eye-recognition program that would allow him to "look" at words or letters so that they could be typed without the use of his hands or his voice. Maybe insurance will help with that. Maybe it won't.

"One of the things that keeps me going," he explains, "is this job."

This mistress. Nick is keeping a journal of his experiences through a blog (www.nickannstreet.com/blog/), in which he cleverly tackles topics that range from the Bowl Championship Series to the stem cell debate. He's thinking about writing a book.

"I believe we'll get a real treatment in the next five to seven years," Nick says. "Will it be 18 months or 18 years? I don't know."

Another grin. The woman he loves. A career he adores. For now, the way he sees it, he has the best of both worlds, dancing with a dream and a nightmare in the same slow song, smiling with every step.

RIP Nick...I hope this post brought you a little into the man I got to know in just a short time...And I hope my words in some way do justice to the man that he was and help to enlighten all of you about this disease...FYI it's been almost four years since he passed and while research is progressing, there is still no known cure...A lot of the money raised goes directly to help provide support for families... 

I just discovered this article after writing as well...Not about Nick, but about another person's battle which provides a little more insight into the disease...Need I mention again...Tonight, all proceeds go directly to the Les Turner ALS Foundation...


Grassroots Fundraiser